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Angels and Heroes and Docs, oh my!

In these days of covid-19 pandemic, we’re all Dorothys, adventuring through a strange new land full of formerly-unimaginable fears. For someone like Hazel…

By William Wallace Denslow – Electronic Text Center, University of Virginia Library, Public Domain, https://commons.wikimedia.org/w/index.php?curid=3476869

In these days of covid-19 pandemic, we’re all Dorothys, adventuring through a strange new land full of formerly-unimaginable fears. For someone like Hazel, who was already mostly-bedridden, the pandemic might not seem to change much, but it does add new anxieties. Hazel is among the most vulnerable, especially for her age group. And today, the fifth of May, is the 13th anniversary of the sudden severe flu-like illness, possibly H5N1 or mononucleosis, from which Hazel never recovered but only got worse and worse. Nevertheless, I have news of progress, thanks to our angels and heroes and docs:

First, some banking progress: Hazel now has a CalABLE account! Here’s to the heroes of legislature who made that possible by creating the ABLE program. It’s a special account to fund her disability-related expenses. It’s tax-free, and there are no fees deducted from your gift like GoFundMe, PayPal, and Facebook charge, so this is the best place to donate to help her.

I know the world is crazy right now, and it’s harder to be an angel if you’ve been grounded by illness or unemployment. It may not be possible to give, but if and only if and when you are “able,” please contribute to her new CalABLE account. Click the link to go to the Gifting Page: https://www.ablegifting.com/CA/DmQy8d to earn your wings.

And now, thanks to doctors, oh my, here’s some physical progress: Hazel is now sometimes able to tolerate wide-open windows, no curtains or blinds, on a bright sunny day! Last week’s phone consult with her doctor pointed up several ways, like that, where we can chart a tiny bit of progress. From always a dim room to sometimes a sunny room. From frequent sleep disturbance to frequent regular sleep patterns. From frequent to rare wishes for death to end the pain. From a lack of hope, to hope. 

The phone consultation was her first in many months so it was long, catching up on a variety of complex questions, and it will be followed by new medications, and none of that is covered by MediCal. For anyone new to her situation, here’s a quick summary.

Hazel is mostly bedridden by severe M.E., with trigeminal neuralgia (“the suicide disease”), and her condition is exacerbated by orthostatic hypotension (she gets dizzy when she’s upright), near-constant migraine pain, and PTSD, plus she’s autistic. She is extremely sensitive to light, touch, sound, and smells, so she can’t tolerate car travel, being handled, being in a clinic full of noise and stink. Between being autistic and the hypersensitivity associated with severe ME, Hazel is bombarded by, and her pain is increased by, every detail from receptionists typing and children crying, to the smells of chemical cleaners and the glare of florescent lights. Plus there’s the crash afterwards–the utter bone-crushing exhaustion of ME’s hallmark symptom, post-exertion malaise, lasts in Hazel for many months after any stress. Even a home visit leaves her sicker for weeks. A trip to see a doctor in a clinic or hospital is impossible for her. She has to have a doctor who does house calls and telemedicine.

Although we had help from social workers, therapists, caregivers, and my own doctor, our strenuous efforts to get Hazel treated at home by in-plan doctors only resulted in administrators, at the sole home visit service which takes MediCal, deciding that her case was too complex for them! Hazel was stuck.

By W. W. Denslow – L. Frank Baum: The Wonderful Wizard of Oz. With Pictures by W. W. Denslow. Chikago : George M. Hill, 1900, nach Seite 36, pdf., Public Domain, https://commons.wikimedia.org/w/index.php?curid=73899256

Fortunately we eventually found her current doctor, who unfortunately doesn’t accept insurance, but who fortunately works specifically with such complex cases of severe, chronic illness. The treatment has to be slow and gentle, but it is having results. 

We had to let up on treatment for a while after moving house, as that alone was a shock to Hazel’s system, but now she’s settled in a better, healthier house, and we can carefully increase the pace of baby steps. Also, the doctor is being extremely cautious around the pandemic, as Hazel is super-vulnerable. Her doctor even canceled a phlebotomy appointment to limit the risk of exposure. I’m grateful for that caution, and the patience it takes for a doctor to treat patients who respond only very slowly with only the smallest improvements. 

As always, I’m doing what I can to make Hazel’s life bearable. I’m planting a vegetable garden, and making the paths between plots wide enough for a wheelchair, in hopes that someday soon Hazel will be able to go outside for a few minutes and enjoy it. I’m also getting the bee-yard ready for tenants. A hive awaits and I’m adding to the bee-friendly plantings. I do my best to make meals Hazel can enjoy, and in general create a safe space and pleasant experiences from day to day, to counteract years of trauma.

The doctor called me “angelic,” and, “a hero,” for doing all I do to care for Hazel. I tried to deflect the compliment like I always do, then stopped myself. It’s true that I can’t imagine doing anything less (I can imagine doing more, but can’t actually do more alas!) but “I only do it because that’s the way I am, and because it has to be done,” is no reason not to accept that I’m doing some good. 

Thank you for being an angel and a hero yourself, who helps in the ways you can, because it’s the way you are and it has to be done. If you can, when you can, I know you will. This link will bring you directly to a page where you can make a gift to Hazel’s CalABLE account.

Unlike the case with the ruby slippers and home, it only takes one click the to go to the Gifting Page: https://www.ablegifting.com/CA/DmQy8d Thank you! And you, and you, and you!

By W. W. Denslow – https://archive.org/details/wonderfulwizardo00baumiala, Public Domain, https://commons.wikimedia.org/w/index.php?curid=69520775

How Sweet It Is

Valentine’s Day is on its way and my sweetness level is low. I’m scraping the bottom of the jar.
And can’t my daughter please just be a honey?

You know how it is, when you’re just too tired to keep going, and you feel you’ve given everything you’ve got to give? You need a rest, and at least for the moment you’re fed up with the demands of your chronically-severely-ill and autistic adult child when you, yourself, are chronically ill.

Possibly, probably, you don’t know how that is. It’s not usual. That’s why I have this blog. I’m trying to explain an unusual way of life. There are so many unusual aspects to this life. There’s how nearly-impossible it is to get her appropriate medical care. There’s the social isolation. There’s the constant shopping and returning items and shopping again. There’s acting as an interpreter, and as a buffer, and as a liaison, between her and the rest of the world. There’s scraping for resources. And there’s rare moments of sweetness. Just at the moment, the sweetness is feeling all too rare.

With anyone else, this would be an abusive relationship: the beloved who always makes demands, who never shows appreciation, who finds fault with everything you do, and who never does anything for you, is not a person you’d stay with in a romantic relationship. When grown offspring behave this way, normally they’re no longer welcome to live with their parents, or if they do then certainly they’ve got to change and follow some ground rules for civil behavior. Extended family members who act like this, become at best distant and barely-cordial contacts. In a friendship, it wouldn’t be tolerated for long. Whoever treats you this way, your caring eventually burns out and turns to resentment, and you make the changes or the break you need, for your own emotional survival.

But when the beloved in question is your grown daughter, who can’t help how she reacts to the world, and who has not another soul to care for her, there’s no room for burnout. There’s no possibility of a break, or a change. It’s just the way it is, and I roll with it, from day to day.

One way to roll with it is to blow off steam. There are not a lot of people I can talk to who understand how it is. I talk to my therapist and after several years working together, she mostly understands, but there are still times I have to explain. We talk around and around some issue, and pick it apart, and grope for analogies though there aren’t a lot of situations that this is like. It’s its own thing, and we’re living it. Anyway, I can blow off some steam talking with my therapist, but often I wish the rest of the world could relate.

So much do I wish that, that here I am spending several paragraphs of preamble and background and, I don’t know, sort of cushioning it all, when I just wanted to say that it’s disheartening at the moment. Earlier this week I thought I had made her my best ever batch of cornbread, springy and moist, and she described it as too squishy and damp. She wanted a mocha this evening and I could barely stand and walk, I was so tired, but once again she’s sleep-reversed and her migraine was intense and she needed the caffeine, so up I got and made it. I thought it was the best mocha I’d ever made. She said it was too sweet.

If she could cook for herself–or shop for herself, clean house for herself, place phone calls and fill out forms and deal with bureaucrats for herself–she might be content with a little less perfection. If she could do those things, she might appreciate my efforts more. If she could see how much pain I am in myself, and what the efforts cost me, she might– what’s the point of those ifs? She can’t. And I’m just sick enough myself, and we’re just poor enough, that there’s not much I can do about it but make do.

Today, she slept while I did our household business and chores, and I guess I ought to have rested more, but the weather was lovely and I did a little gardening, figuring that was “my” time. Doing something that gives me pleasure is necessary to help keep me going, right? I’m so grateful to have a garden. I’m getting it ready for bees, and I saw a honeybee on a dandelion today. Delight! But by the time daughter woke at last, late in the day, needing breakfast, my caregiving day was just beginning but I was already exhausted and aching.

I pushed myself and made her meals and beverages. When a cooking smell bothered her I opened windows. When neighborhood noises were too much for her I closed the windows again. When that wasn’t enough I went out to investigate and see if I could find out what the noise was and whether it could stop soon. A whole string of things were hurting her, and a whole string of solutions were inadequate, and it would not have done a bit of good for me to snap.

All I can do, is do my best, and let the criticisms roll off, and be delighted when, every now and then, my efforts do delight her. And yeah, I can blow off a little steam. It helps. Thanks for listening.

She’s really trying to relate well, and to transcend the pain, and to not be bothered by the irritants. Actually the worst thing, that hurts my heart the most, is when she does realize how hard she’s being on me, and apologizes. There are days when it seems everything she says starts or ends with, “I’m sorry.” I tell her, “Don’t be sorry. You’re doing your best.” I let her know, the best I can, that I do see her efforts. She can rarely let me know she sees mine, but every now and then, she does. When she can, she goes out of her way to thank me. She always was so sweet, before she got sick, and that person is still there, struggling to express that sweetness through a barrier of pain.

I’ll rest, and I’ll hope to gather a little pollen from somewhere, to make a little more honey in my heart. Gotta find the sweetness that sustains me and if I don’t have it and can’t find it I’ve got to make it myself. And I’ll make the mocha less sweet, next time.

p.s., If you can be a honey, and make life sweeter for Hazel, here’s the link for donation pollination: Pathways of Healing (and a pocketful of hope) for Hazel.